Symptom related to sleep apnea or something else?

[Desperate_in_DM]

For months and months now I feel like my brain is swelling and is too big for my skull. The doctors want to know where I feel the headache, but it's everywhere. I feel intense pressure behind my eyes, across my forehead, in my ears, my cheeks, my gums and teeth, top of my head and the back of my head.

I also feel like I'm in a dream-like state or like my body is swimming. It's sort of the same feeling cold medicine can give some people, but worse. I can see myself doing tasks, but it's like I'm watching it happen, not doing it myself, if that makes any sense. I have blurred vision and if sleep deprived enough, I see double. This is different from the severe headaches I feel each and every morning.

I've only been on my machine for a month. Not feeling any benefits yet. I was just curious if my symptoms could be attributed to sleep apnea and might get better after being on the machine for a while or if they were unrelated and I should see a doctor about my symptoms.

Thanks, gang!

[tattooyu]

I guess it could be a symptom of untreated apnea. Sometimes, during the day, I'll feel like I can still feel the pressure in my sinuses even though the air is obviously not flowing through them. It's kind of like when you have your sunglasses on the top of your head, but when you take them off it still feels like they are there. Do you have this pressure when the CPAP is on as well?

[Desperate_in_DM]

It never goes away. It's a different feeling from the painful, stabbing headaches I get across my forehead when I wake up in the morning. Swelling, that's the best way I can describe it, from the neck up.

[Emilia]

I'd give the cpap therapy some more time to work. You have a lot of sleep debt to work off yet. I often feel woozy or not 100% in the moment.... a sleep deprivation side effect, I am sure. I often have to check and recheck my work to be sure it is ok. I also get feelings in my head that seem like pressure, but they fluctuate from day to day. I imagine some of it is blood pressure or anxiety or just from being exhausted. So, tonight I begin my cpap therapy, and I will be awaiting the changes that will come from that. I think I have a much clearer perspective now to the fact it won't be an overnight miracle, but it will take some time. It will be an interesting journey.

[breakfast]

How's your blood pressure?

I am prone to feeling that when my BP is high (I mean super super high). I know exactly what you're talking about, I think, and it really is terrible. If it's interfering with your life, get checked. If it gets worse, get checked ASAP.

[CAsleep]

That sensation you describe of being out of body is often called derealization or depersonalization. I bet if you used those words in front of a doctor, though, they would think you were a crazy person who diagnosed themself online. So you may want to approach the whole subject cautiously. Anything you feel inside your brain can tend to get you labelled crazy, or just result in a lot of of shrugs on the part of doctors.

You are actually very astute to even be able to describe that strange sensation so well.

I have tested positive for Lyme disease, and another infection called Bartonella that can get into the brain. The derealization feeling is a common complaint on the Lyme sites I use. If you haven't been tested for Lyme, you may want to. Keep in mind that the tests are not always accurate. I see you live in Iowa. Lyme does exist in the Midwest, especially in WI, but in other states too. You will probably run into problems getting a doctor to test you though, because in Iowa, they are still in a state of Lyme denial. Some antibiotics that people on those sites have told me help with the derealization feeling are: Rifampin, Levaquin, Bactrim DS, Factive (which is similar to Levaquin, but fewer side effects). You may experience an initial "die off" reaction.

Of course it could also be apnea, or any other number of things. So hard to know. I'm sorry to bombard you with so much info at once. My heart goes out to you. Best of luck!!!!!!!

[echo]

This is similar to the headaches I get due to my food intolerances - basically a migraine with stabbing pain in the sinuses, combined with a more general overall tension headache that goes into my shoulders and neck and upper back. You might look into that, especially if your headaches have been around for a long time. Wheat, corn, soy, milk, chocolate, wine are big culprits. My doc said the symptoms were literally due to the brain swelling (inflammation I guess) from the reaction to the food.

Regardless, those symptoms don't sound good. Headaches can be symptomatic of other head/neuro issues - if I were you I would check with a doctor, or since it sounds like you have already, to push for some testing. My first reaction would be to check for a major sinus infection or BP problem (but I'm no doctor).

[Desperate_in_DM]

My BP is typically low, very low so I don't think that would be the problem.

Two years ago I was bitten by an insect, but I didn't see it. I had a horrible reaction and had very large oozing blisters on my leg the size of a softball. The initial "bite" was a black dot, then a red ring, then all the blistering, then another red ring. I also had red "streaks" going up my leg. One doctor thought it was a poisonous spider bite and treated me with antibios. Another doctor suspected it was a tick bite. Oh, I was in Northern Michigan when I got bitten. I was tested for Lyme and it was negative. Last year I still wondered if it was Lyme and asked to be tested yet again. Still negative.

One of my many diagnoses I've received in the last 2 years was possible Lupus. I had a positive ANA on my blood test and a number of the general symptoms, but didn't have enough of the tell-tale symptoms of Lupus. My rheumatologist said he suspects I have Lupus, but until I developed one or two more of the telltale symptoms, he didn't want to "label" me with Lupus. For a long time my cranial pressure were attributed to Lupus and the inflammation associated with it. 10 months of medication for inflammation helped so that I could walk and actually lift my son, but did nothing for the pressure in my head. The rheumatologist told me to go back to the GP and start over.

GP thought sleep apnea. And so here I am....still with the painful pressure that makes it hard for me to concentrate and think clearly.

ETA: My complete list of symptoms I have been experiencing for over two years are: arthritis and inflammation of an unknown origin per Rheumatologist, EXTREME fatigue (that isn't controlled by anti-fatigue meds), cranial pressure, depression (probably because I've felt ill for 2 years), minor anxiety (worse during certain activities), irritability and uncontrollable rage, non-refreshing sleep, feeling overwhelmed ALL the time, no sex drive, Reynaud's phenomenon, mental confusion, no appetite but I'm gaining weight.

[Captain_Midnight]

D in D- - One thing to consider is chronic inflammation (caused by OSA). I know that had something possibly similar, and it improved some w cpap, and more w apap (which I optimized w data feedback). I also take fish oil supplements, but I never recommend that others do what I do.

You might consider monitoring your AHI and seeing if there is a correlation between AHI and your headache sensations.

Re Lyme's disease, as I recall, the serological testing can give false negatives, especially if one has had the condition for a longer time. The lesion you describe (sometimes called a "bullseye") is a characteristic of Lyme's, so it is within reason to pursue this angle. (And, one suspects that this could be made worse by OSA inflammation).

Good luck in resolving this!

.

[LymeAdvocate]

Just so you know, here is a great resource to learn about Lyme - Lyme Disease Research Database. My partner has Lyme and the research, interviews and articles on the site saved her life!

[dreamchaser]

Seeing as you have a 21 month old baby have you been checked for Post-Partum depression?
Jan

[echo]

Let me add one more to this list: possible hypothyroidism? I realize that may not be the primary issue, on the other infection and continuous inflammation may have caused thyroid damage over time and that may make it harder to recover (it can cause fatigue, difficulty recovering from infections, weight difficulties, etc). I very much like the website http://thyroid.about.com , you can find a symptoms checklist and tons of useful info. Again, I'm no doctor, I'm only talking about what I have had experience with!

edit : something that is really good against inflammation is to drink aloe daily. that, and spicy chilis/peppers.

[CAsleep]

Oh great, you had the streaks too. That is usually considered the "bartonella rash." Bartonella can be carried by ticks, in addition to Lyme disease. So some people get more than one infection from the same tick bite. Some ticks carry bartonella only, and no Lyme, but in your case, it sounds like you got both, because you had both rashes. The bullseye rash on it's own is diagnostic of Lyme disease in the early stages, even if your tests come back negative. I am not sure what the tests would say now, like if you are still not showing many antibodies....but I can tell you, that it's common to test negative, because the CDC requires so many bands on the Western Blot to get a positive. Some people are one band shy of the 5 required, but they are told they don't have Lyme. Sigh.

First of all, your description of feeling out-of-body....I have only really heard that with Lyme patients so far (after delving deep into CFS before the Lyme diagnosis), and among the Lyme patients, it's normally the ones that also have bartonella "co-infection" (I would say it's about 25% of us Lyme people that either test positive for bartonella or have reason to suspect it, like the streaky rash you describe).

Most people on these Lyme sites, along with their doctors, have figured out that the "out of body" feeling in the head is due to Bartonella, not Lyme (though some suspect it could be brain inflammation from the Lyme itself). That's why I gave you that list of drugs in the previous post. They are not the greatest Lyme drugs, but they are good for bartonella, which I think is causing the brain problems for you.

Treating Lyme this long after the bite can be a real hardship...I have been through it. Once it gets to the point that it has been in your body for quite some time, the treatment is much longer, and not always effective. Though some people do recover quickly, and I hope that is you. The best thing to do is when one antibiotic isn't working, switch it up, and keep trying different antibiotics until something helps. It will require a real gem of a doctor to help you with something like this, because there is a Lyme controversy among doctors (some are willing to treat with longer courses of antibiotics while some are not and tell you nothing can be done) that has become really difficult to navigate, as a patient.

Many Lyme patients are told at first they have lupus, because many end up having a positive ANA. I would urge you though to NOT take steroids, because that will make an infection like Lyme worse. If you have taken steroids, have you noticed your symptoms getting worse?

I can't remember, are you the one that said you have anger issues and personality changes? So classic bartonella/Lyme. Bartonella is really the one that results in all the strange brain stuff, so they say. Bartonella normally takes less time to treat also than Lyme.

Here is a good site: http://flash.lymenet.org. I have gotten about as far as I can get with Lyme and Bartonella treatment, but I will tell you that once I started taking Bactrim DS, for the first time since my mystery illness started, I felt like I was living in my old brain again. I felt like I went from being on the outside of my brain, to inside my brain. But I had to try quite a few drugs before I found what really helped it. But I just wanted you to know that that feeling can get better.

My fatigue is still pretty bad, but not as bad as it used to be. I think the remaining fatigue is from the untreated apnea in my case. But because of your symptoms, I think you will need to treat both apnea and Lyme/bartonella, if you do indeed have those. I can't see why you would not have them....the bullseye rash is all the proof you need for Lyme, and the streaks indicate Bartonella. I will come back with some pictures for you.

[LSAT]

Desperate...you said..."I've only been on my machine for a month. Not feeling any benefits yet. I was just curious if my symptoms could be attributed to sleep apnea and might get better after being on the machine for a while or if they were unrelated and I should see a doctor about my symptoms."


You mean you've been having this problem for"months and months" and you still have not been back to the doctor??? There are too many things that could be causing your symptoms...some minor and some very serious. Get going girl...your child needs you in good health.

[brazospearl]

Desperate, honey, bless your heart! I know it's hideously frustrating to KNOW there's something terribly wrong with you and not be able to get the docs to take you seriously, much less figure out what's wrong. It sounds like your symptoms can be traced to the insect bite, so it might be a good plan to go to the Lyme forums, collect your ammunition, I mean INFO, to present to your doctors ASAP. If your doctor won't listen it might be a good idea to find somebody who specializes in Lyme issues. I bet one of them would love to help you! That said, there are probably other factors at work here as well, as nothing exists in a vacuum. You might be just a tad hypothyroid, and probably a bit depressed (you'd be crazy if you weren't depressed at this point!), and there could be other conditions as well. And treating your OSA will improve all of these situations. Good luck, and keep us posted.